About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, January 18, 2014

Here I am again! How are you? Happy New Year! Hoping everyone had a safe, happy holiday season! I've been wanting to blog for a while, but so hard finding time! If I'm not in a "writing mood" it won't turn out the way I want either, so .... I've asked Mark to try and entertain Hanz, as he's usually swiping @ my ankles to get my attention while I'm on the computer! During the week of course Mark and I both work and I miss Hanz and Bella all day long - when I get home, I can't wait to spend time with them! It's the reason I don't play games on Facebook (who has time?), because then I feel like I'm neglecting them! I'll sometimes be standing in front of the TV a few minutes, and I get the "rump bump" from Hanz! Stands on his hind legs and with his front paws he bumps my behind as if to say, "pay attention to me Mommy"! Love my furry kids! They enjoy being our shadows and follow us everywhere! Hanz is taking a nap so he can stay up late and watch The Golden Globe Awards with me this evening!

Ok, so had to go back to CO a couple weeks after my first reconstructive surgery with Dr. Robinson mid-November, because my lip came apart after he removed the sutures since the tissue in the area wasn't healthy.
Mark and I left Corpus Christi early and then ended up having an hour delay in Houston! Luckily, it didn't interfere with our connecting flight. But look who got on the plane in Houston - this nice lady had her furry kid with her - an Affin Pincher named Cooper! Such a cutie and very well behaved! That breed is like a cousin to the Brussels Griffon, like our kids! Bella would never sit still if we ever took her on a flight, she's be running up and down the isle and licking everyone! Hanz would be wagging his backside, just thrilled that there were so many people to have fun with! Yeah, like they would allow them out of the seat/carrier - funny!

Finally arrived in Denver and could not find the name of the car rental in the paperwork we had with us! Celia had made the arrangements and printed out the info, but none of us had noticed that we could not find the name of which rental place it was! So that took a while - I think Mark asked one of the people @ the airport that help lost passengers find their next flight - anyway, all that was making me late to get to my appt. @ Dr. Robinson's office, so we could go over a few things before surgery in the morning! The snow was still holding on - this photo is outside Dr. Robinsons office!

Soon as we were done @ Dr. R's, we headed to the hospital to get admitted!

There wasn't time to try and get everything arranged to have Dr. Robinson do the surgery @ Swedish as he did in November, so this would be our first time in a different hospital where Dr. Robinson normally practices called Sky Ridge Medical Center! It is a beautiful hospital and everyone is so gracious and makes the patient their top priority - like @ Swedish!

Since it was right before Christmas, there was poinsettias everywhere!

Since it was after regular hours, I was admitted through the ER, and while I was still in the middle of that process, I got a call from one of my besties that lives in Dallas! She was calling to wish me luck on my procedure which I thought was so thoughtful! Patty and I have known each other 40 years - I like to say we met when we were 1, but we were actually more like 12 and 13! Said she would call back once I got settled in the room so I could finish getting my paperwork done. Patty and I used to have sleepovers while we were still in middle school, and we used to stay up late talking in the dark, playing silly games like, "who would you rather marry, Donny Osmond or Andy Gibb"! For laughs we'd sometimes change it up by saying, "who would you rather marry, Tiny Tim or George Goble"! Some of y'all reading this won't know who those people are, but moving on ....

Got settled in my room, getting everything lined up as far as getting Respiratory to come in and set up the humidifier water/hose for my trache, had to get blood work to get a cross match in case I needed a transfusion during surgery - you know, all the fun stuff that goes with that scenario! The nurse had been in and out several times, super nice - good sense of humor... so @ one point I was sitting on the bed with my back to the door and I heard the door open, and someone said, "who would you rather marry - Justin Bieber or Russell Brand"? I remember thinking, WHY on earth would the nurse be asking me that?! I turned around and was so shocked to see my bestie Patty! OMG! I could not register it in my brain because we had already had such a long day in airports, Dr.'s offices, car rentals, etc. and in my mind I'm going, "Ok, Patty lives in Dallas (well, Frisco) and I know I'm in Denver! I think. I had no clue that Patty had called my sister Celia and Dr. Robinsons office to get all the info she needed to surprise me! She was in Denver for a work conference and thought she'd drop by to say hello! Isn't that awesome? I hadn't seen her for several years, but we always keep in touch, and I had no clue when she had written me an e-mail prior to my arrival asking for details about the hospital and all that she would be dropping by! It's things like this that make it a little easier to keep on going when there are times that I just feel I can't take any more trips, surgeries, bleeds or whatever goes with this avm nightmare! It was such an incredible feeling knowing Patty took time out and went out of her way to make me feel so special! She's such a doll - brought me a box of Godiva chocolates! Oh, and since Justin's a little young for me, I had to go with Russell Brand - ha, ha!

It was such a long day for both of us and Mark takes such great care of me - poor guy, exhausted! Could not handle any of this without Mark - he always knows what to do to make me feel better. Mark does all the cooking and takes such great care of Hanz and Bella! He feeds, bathes and grooms them - picks up after them and takes them out for walks! Sometimes I can go on the walks too when I feel well enough to keep up! All I have to do is love them, hug them and tell them how much I love them!

So, here are a few photos of me right before surgery!

With the anesthesiologist -

Surgical nurse - check out her cap! Dr. Seuss!

One of the things Mark liked about Sky Ridge Medical Center (SRMC) is that in the surgical waiting room - there is a screen with updates on how patients in surgery are doing! I forget what my number was, but you get the gist!

Here I am after surgery!

Here is a photo of the stitches once the dressing was removed! Dr. R. was happy to find some healthy tissue a bit lower down my chin!

Dr. Robinson wanted me on liquids and no talking for a couple of weeks @ least. Huh. He said it was just his precautionary advice. He was able to remove the stitches in my gums from the November surgery, so that was good!
Can't remember how many days I had to stay in the hospital - but I do know I had a pseudomonous infection (which isn't surprising since my lip had been all opened up), so got some IV antibiotics while still @ SRMC. I believe we had a couple days after being released before our flight home, so I came back to SRMC a couple of mornings to get more IV antibiotics! I had posted this next photo on FBook - had to laugh when I saw this Suggestion Box down the hall from my room - because Sheldon on The Big Bang Theory is always filling that suggestion box @ his place of work! I hadn't realized I was wearing my Sheldon t-shirt until after I saw the photo!

Day two of outpatient IV antibiotics. Of course we arranged for Walgreens Infusion to deliver more antibiotics to continue @ home! One of the nurses from Christus Spohn Home Health came by the house to get that started for me after our arrival. Luckily I only needed the antibiotic once a day and Mark is a wonderful nurse, so he took over doing that for the next few days!
Unfortunately, the meds made me nauseous, plus, having to be on liquids didn't make me feel any better! UGH!

After I was done getting my IV meds, Mark and I would go to Barnes and Noble for a little while. Or to get a few things @ Whole Foods - love that place! Check out the gingerbread house!

We made sure and spent a little time @ Swedish - ran into these ladies dressed as clowns doing volunteer work! We stopped and talked to them for a while and I gave them my blog card - asking them to check it out when they got a chance! It's wonderful knowing how many people take the time to help others and try to cheer them up by getting all dressed in their costumes and handing out cute stickers to the kids!

Then it was finally time to head home! Here's Mark @ the Denver airport!

Once we got through security and settled in @ the right gate for our flight, I made my way to the food court area to get a smoothie! The clerk that took my order was a doll - she totally let me have it for free! Thank you so much!

Couldn't wait to get home to our furry kids! Look @ Bella - she adores Mark and is so happy to be with her Daddy!

We just adore these two - Mark calls them monkeys!

I'm on an avm support group on Facebook and wrote a comment on there the other day and next thing you know, I get a reply from a fellow avm-er and guess what? She had recently started seeing Dr. Yakes and lives here in Corpus Christi, TX! She knew there was another patient in town, because Dr. Yakes has a world map in his office with pushpins showing where avm patients that come to see him are from - and there was a pin on CC, TX! So, made plans to meet up with Amber Brown - Mark and I wanted to give her the benefit of all our experience, even though our avm's are in different areas - there's so much to learn when you start treatments! Amber is super nice and we've since kept communicating! She also has furry kids, so she totally gets that about us! Amber shares our love of everyone @ Swedish and thinks Dr. Yakes staff is awesome too!

Oh! Can't forget that Mark celebrated his birthday New Year's Eve! His oldest brother Jim and his wife Shelley that live in Rockport, took him out to lunch at a Mexican restaurant! Mark had texted me the photo since I was at work - and I asked him if a shot of tequila came with the hat!

Mark had been wanting to see the latest Lord of the Ring series movie, so we ventured out to do that the day after his birthday! Here we are waiting for the time to be let into the theater!

I rarely go anywhere besides work, the grocery store a few blocks away and sometimes to Barnes and Noble to get free WiFi for my Nook for the free Friday book offered! Those outings are tolerable because I'm only there a short time. I just don't feel well enough to be out for a long movie and due to never getting a full nights rest and all the meds I'm on - I fell asleep several times during the movie - Mark had to nudge me awake! I realized that since 2008, the only movies I had ventured out to see were the 5 Twilight ones! I remember falling asleep while I was waiting on that last one to even begin! Took a steroid to keep me awake during the movie!

My co-workers are extremely supportive and I appreciate that so much! One of my probation officer friends down the hall from my area has a couple of Yorkies and she had company over the holidays (her cousin's girlfriend from Austin) that brought her Brussels named Romeo! She grooms him herself - cute!

I was asked by a co-worker the other day when I was going back to CO. Realistically - our goal was to at least stop the bleeds, which it seems that Dr. Robinson has done by cauterizing the capillaries in my gum area where the bleeds were coming from. I am still recovering from that Dec. surgery, and I need a break from the whole thing! I'm sure it's hard for anyone to imagine how difficult these trips are - especially now since we started surgeries with a new doctor. Reservations need to be made for flight, car rental, hotel; insurance to be verified - my secondary insurance never paid anything stating these surgeries were not medically necessary! I still have so many things that I need to have "fixed" in order to function normally and I just don't know if that will happen! If Dr. Robinson had a hard time finding healthy tissue working on lifting my lip - I can't imagine what will happen when he wants to start working under my chin area! There are still coils in there that need to be removed and several other issues that still need to be resolved! I am very blessed to have so much love, prayer and support - but it is emotionally, physically and mentally draining to go through this process! I just want to give up completely sometimes, no longer having the strength and will to endure any more! Not to mention, just tired of constantly not feeling well and having people stare at me like I'm a freak when I'm out in public! That does a lot to your self worth! I battle anxiety, depression, insomnia @ night - but at least it seems the bleeding is no longer a problem. That used to be a huge problem!

My primary care physician, Dr. Boynton, removed half the sutures approximately 3 weeks after my surgery, and then the rest of them a week after that! Want to make sure that area heals well, so Dr. B. prescribed some oral antibiotics to prevent an infection and some Tamiflu for me - hoping to avoid the flu Mark battled for almost a week! Dr. B. also prescribed some wound care for me to give that area where the stitches were the best chance of healing! I've been seeing this group of techs for a long time - they work out of Corpus Christi Medical Center, that is the hospital several blocks from our home! They were very impressed with the photos I showed them of how Dr. Robinson had lifted my lip and how much better I looked since the last time I had seen them for wound care! I was catching up on everything with the techs and sharing photos from our phones and I've been wanting to show you the group of people that have helped me so much! There was times I would drag myself in there first thing in the morning before work for my wound care appt. and not in the best mood because I was going through - but these folks are so caring and professional, I always left with a smile! This photo one of the techs shared with me was taken during Halloween! I've no football knowledge, but Kelly is #48 and the main one that usually does my wound care! I remember the tech on the lower right corner telling me she has a friend that years ago had her leg amputated to get rid of an avm. What can I say, I can't cut off my head! Facial avm's are extremely delicate and complicated - but I am so grateful for people in the medical field that help patients like me that need them so much!

Showed one of my football fanatic co-workers the photo and she was able to tell me what team each jersey represented! The closest I'll be getting to football is maybe tuning in to the Superbowl at half time because Bruno Mars will be on! It's award season and my superbowl is the Oscars! Already caught the People's Choice Awards, The Golden Globes and tonight - the Screen Actors Guild awards!

Loving American Idol this season, with another of my favorite people - Harry Connick, Jr. is now one of the judges - cool! I'd love to see him perform live one day, as well as Taylor Swift! I used to want to go see Randy Travis, but unfortunately I don't think that will ever happen with his health issues after suffering a stroke. Never got a chance to see Ray Price and now he's gone.

Here is a photo of a Brussels Griffon we saw at the Vet not long ago named Minky! There aren't many Brussels in Corpus Christi, so we love running into people that also have one! Minky looks like a cross between Hanz and Bella! I want to say this lady has two more Brussles at home that are male!

I keep in touch with another Brussels owner on FBook and she lives up north! She has several - and one day she said she opened the door to throw some bread out for the birds, and her Brus ran out into the snow going after that bread! Look at this adorable photo - those eyes!

Here's the other two she has! They're actually a little family - she has a male and female that had 2 puppies and she kept one and her mom has the other puppy that she brings over often! She has a couple of videos on U-tube of her kiddos - I post one on my Facebook page and the other is called "Brussels is a good boy" if you ever want to view it - cute! You can hear her accent when she pronounces the word chair (sounds like chayah). I went to college in Miami a few years and there were a lot of kids from the Tri-State area, Boston, Rhode Island - and I had forgotten how cool it is to hear accents - you don't hear that down here really. Ironically, as long as Mark has lived down here, (over 30 years) he sometimes gets asked where he's from - I don't hear his accent at all, but I really do when we speak to one of my sisters-in-law that still lives in OH!

We recently had some very cold temperature for South Texas and that does not make me happy! I'd much rather be hot (you can always strip and get a frozen Mark-a-rita) than be too cold and have to bundle up with several sweaters, jacket, gloves or whatever it takes to keep warm! Saw this when we were having that polar vortex and had to share!

You know I always like to add some humor to the blog - this was posted by a friend of Moms on her FB page!

Ok, I think I'll throw in a load of wash and then come back and try and figure out how to flip those photos so they show up the right way!

Much love to all of you! Thank you for all your love, prayer and support! I have no idea what my future holds as far as my health - I just want to take time to heal a while! I appreciate you keeping up with me!